Privacy vs. science for HIV patients

Saturday

Nov 24, 2007 at 2:00 AM

Nearly a year after federal health authorities required states to track HIV-positive patients by name, many health care providers are torn between the threat of losing federal dollars and protecting patient privacy.

MARY ANN BRAGG

PROVINCETOWN — Nearly a year after federal health authorities required states to track HIV-positive patients by name, many health care providers are torn between the threat of losing federal dollars and protecting patient privacy.

Since 2000, federal authorities have been moving toward requiring name-based reporting of HIV diagnoses. Near the end of 2006, a federal mandate tied federal funding of state HIV programs to compliance with name-based reporting.

At least $34 million in federal money is at stake, state officials said.

Local physicians worry HIV patients may avoid the treatment they need because of fear over giving their names to a government agency.

The issue is complicated by a state law passed in 1986 prohibiting physicians from revealing HIV patient identities without their consent. That law appears to conflict with the new federal reporting requirements and creates a potential for lawsuits, according to health care administrators.

"We're kind of between a rock and a hard place," said Henry Tuttle, executive director of Outer Cape Health Services, which has offices in Provincetown and Wellfleet.

While local health care providers have their concerns, those diagnosed with HIV worry about having their name "out there," believing the stigma associated with the virus can affect their ability to obtain insurance and potentially damage relationships with family and friends.

Outer Cape Health Services patient Richard Brunson, 59, of Provincetown was diagnosed with HIV 14 years ago when he worked as a senior vice president in a corporate human resources department in North Carolina.

The president of the company asked Brunson to alert him to employees with high-cost medical problems and held boardroom discussions about limiting health insurance coverage for people diagnosed with HIV, Brunson said.

Brunson learned of his HIV diagnosis when his family doctor called. The physician first asked whether the phone line was private.

"For me, this is not a scientific conversation, this is a personal conversation," Brunson said.

Federal authorities believe a rigorous scientific approach is needed to analyze the HIV virus and AIDS, particularly as the epidemic changes and shifts into new populations.

The federal Centers for Disease Control and Prevention has in the past two years strengthened its guidelines to states for reporting HIV patients by name, according to spokeswoman Nikki Kay.

"If a person were diagnosed in one state and they go to another state, the systems didn't match up," Kay said. "And because the HIV-diagnosis data is analyzed by name, the code-based systems can't be included in that analysis."

In addition to requiring named-based reporting in the name of science, the U.S. Department of Health and Human Services, the federal agency charged with doling out HIV program money, has linked state funding requests to whether a state requires HIV reporting by name.

Public health data is used to understand the spread of disease and allocate money to reduce the negative effects of disease, state health officials said.

The state Department of Public Health tracks diagnoses for 80 diseases with name-based reporting. State officials began tracking AIDS patients by name in 1983.

Tracking HIV patients by name began Jan. 1.

Prior to Jan. 1, the state used an encoded identifier for all HIV patients, roughly 7,700 people, state officials said.

At a public health forum on Provincetown earlier this month, Outer Cape Health Services officials discussed how their facility is coping with the named-based HIV reporting dilemma.

The Outer Cape medical service plans to talk with existing HIV patients and obtain their consent before re-submitting their diagnoses to the state with the name attached. New patients will need to sign a consent form indicating their willingness to have their names submitted to the state.

Fenway Community Health in Boston also has decided to talk with its existing HIV patients, about 1,100 people, and obtain their consent before re-submitting diagnoses with a name attached.

So far, about 25 percent of those asked have declined to have their names shared with state officials, Fenway Community Health medical director Alex Gonzalez said.

For new patients, Fenway Community Health has revised the general consent form all HIV patients read and sign.

The consent form now includes notification that a patient's name will be sent to the state along with the diagnosis, Gonzalez said.

Confidential and anonymous testing for HIV outside a physician's care — such as offered at the AIDS Support Group of Cape Cod — is still available, state and local officials said.

State authorities have given physicians until Jan. 1, 2008, to report all of their existing HIV patients by name. That process is about 50 percent complete, said state AIDS/HIV bureau chief Kevin Cranston.

"We don't come after providers," he said of physicians who are reluctant to report HIV patients by name. "We look at patterns. We try to be in a supportive or constructive relationship, not punitive."

Mary Ann Bragg can be reached at mbragg@capecodonline.com.

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